Severe Side Effects with TCHP Chemotherapy

GMD - in my experience - yes, it gets worse before it gets better. But it depends on the side effects. Fatigue continues to get worse. If your white blood cells go down, ask about neulasta. I had an injection 24 hours after each infusion. You shouldn't have nausea - that's controllable. Talk to your MO. I had lots of diarrhea. Yes, I got meds & they helped, but I still requested an extra bag of saline infused between each of the 3 week cycles so I wouldn't get dehydrated. You can get mouth sores, but I mostly missed that one.

Are you icing to help from losing your nails? I used frozen peas on my fingernails and didn't lose any. You're about to the stage where I lost my hair. Rather than shave my head, I got a buzz cut.

I would suggest you join one of the chemo groups for those in treatment right now. It helped me so much to share the journey, the side effects and the solutions. There should be one for March & for April - something like "chemo in March"

I'm pretty sure this is the link with chemo tips below.

https://community.breastcancer.org/forum/69/topics...

GMD what are you experiencing that you think is severe?

I also had a very hard time on TCHP, so "normal" can include a loooong list of pretty hellish symptoms, but an "allergic" type one (trouble breathing, rash) or fever of 101.4 or above is one you definitely want to tell someone about ASAP.

I was absolutely miserable for 11 days of each cycle (severe diarrhea and terrible grinding stomach pain, every mucous membrane tender and bloody, a woozy drugged feeling, extreme fatigue, dry skin, dry mouth and altered taste buds... On and on), felt a little better the next few days, and (at the beginning anyway) had a few "good" days at the end of my 21 day cycle. As the cycles went on it was harder to recover and my "good" days were spent on the couch with anemia and severe stomach pain.

Hi,

I am so sorry to hear that you are having such a terrible time on TCHP. I, too, had those same issues. My oncologist assured me that those of us who experience horrible side effects have the best outcome. (I hope he was telling me the truth!)

I had major leg weakness along with hip/joint pain during chemo. Sometimes it was an agonizing ache, and sometimes it was muscle spasms. Sometimes it was both at the same time. Although this has subsided, there are times when this comes back to haunt me. There were times I could only walk a few steps at a time, and I had to have someone hold me up in case I couldn't make the next step.

I had chemo delayed 2 times; both were due to hospitalizations. My WBCs dropped to a dangerous level, and I did have the neulasta injector each of my 5 chemos. I was scheduled for 6, but I ended up with CHF and we had to pull it.

I lost weight on chemo, but I did gain it all back. As long as your team is monitoring your progress, that part should be ok. I encourage you to call their oncologist-on-call any time you have a question/concern. They are usually good about responding ASAP.

Another suggestion is to have them run your next herceptin slowly. It made a difference for me when I had chest pain. I'm not going to lie. Chemo was hard! However, you are 1/2 way there, and you're going to make it to the finish line! Please reach out if you need a pep talk. Many of us have been where you are now, and we remember how difficult some of those days were.

Sending hugs and prayers!

My first infusion gave me pretty severe side effects, but numbers #2 and#3 not so bad. I think my first chemo side effects were more intense because the first was loading doses, and the subsequent infusions were lower doses, but I had some side effects that were also cumulative. That said, I still had 10 days of the Big D and mouth tenderness, loss of taste, fatigue, etc., with each infusion, except the final one. Infusion #4 and #5 were worse than the previous two, but by some miracle #6 was a breeze, never even had any GI issues. I struggled with eating the first 10 days, then would ingest as much protein as I could, even if I couldn't taste it, the next 10 days before the next infusion to try to keep my hemoglobin up. If you are experiencing muscle fatigue it may be due to low RBC and hemoglobin. Keep an eye on this as some people become symptomatic and need a blood transfusion even if their hemoglobin is above 8, which is the usual cutoff. Look out for shortness of breath, lethargy (beyond fatigue), dizziness, or disorientation, and let your oncologist know about any of that asap. Try to get as much protein as you can - I ate red meat (tasted like cardboard) and Greek yogurt, scrambled eggs, and fortified cereal - this is in an attempt to help boost your RBC and hemoglobin. I never required any delay or dose reduction, but know that it is common. Do you gain back any weight each cycle? I lost and re-gained, and ended up post-chemo with a net gain. The chemo you receive is calculated by BSA (Body Surface Area) each time you get an infusion which is a computation of height/weight, and the primary reason you are weighed at each appointment. This means you get an appropriate dose based on your new calculated number - if you weigh less you are already getting a dose reduction, but does not preclude an additional percentage reduction of dose if your onc feels it is necessary to remediate any severe side effects. If you look at the websites for all the drugs you receive you will see the dose is not a set number for everyone, but rather so many mg (of drug) per kg (of weight) - this is determined by the BSA calculation.

Take a look at fasting or "fasting mimicking," I fasted prior to chemo and it made the GI issues much better.